Public and Patient Involvement

Patient and Public Involvement (PPI) means involving people with lived experiences, along with members of the public, to shape research that impacts them. PPI is at the heart of SCONe’s mission, ensuring our research remains impactful, inclusive, and relevant for the Scottish population by continuously incorporating the insights of patients and the public. PPI serves several key purposes within SCONe, which include:

• Engaging the public and patients to ensure our research reflects their true preferences and needs, making outcomes more relevant and impactful;
• Enhancing the quality of research by incorporating the lived experiences of those affected by age-related conditions like macular degeneration and glaucoma, as well as neurological conditions such as Alzheimer’s and Parkinson’s disease;
• Making research more ethical and transparent by giving individuals with these conditions a voice in the process. This commitment aligns with the principle of “nothing about us without us”, ensuring that their experiences and insights are at the core of SCONe’s work.

SCONe researchers collaborate closely with our panel members, who offer valuable advice, guidance, and feedback on the progress and broader implications of our research. These members have lived experience with Age-Macular Degeneration (AMD). Their unique perspectives help shape and enhance the impact of our work.

The PPI panel’s contributions have been instrumental in informing various aspects of our research. For instance, they have participated in discussions on the development of educational materials aimed at raising awareness about preventive eye care. Their feedback has also guided us in crafting public engagement strategies that resonate with the community, ensuring that we communicate in a way that is accessible and relevant.

For SCONe, considering the impact of our research on patients and the general public is crucial at every stage. Our PPI panel plays an integral role, and we are immensely grateful for their time and contributions to this research project. We continually seek to involve them in new initiatives, such as upcoming community events and health campaigns that aim to promote the importance of regular eye examinations.

SCONe invites individuals affected by or interested in age-related, systemic, and neurodegenerative eye conditions to join the SCONe Advisory Panel. Your insights and experiences are invaluable in shaping our research and making a positive impact on health.

• This platform enables members of the public to share their opinions on a range of research topics and initiatives.
• You will have the opportunity to participate in online or in-person consultations, focus groups, written discussions, and brief surveys.

We particularly welcome

• Individuals with age-related eye conditions.
• Those living with high blood pressure.
• People with diabetes.
• Individuals with neurodegenerative conditions, including cognitive decline, dementia (such as vascular dementia), Parkinson’s disease, Alzheimer’s disease, motor neuron disease (MND), Huntington’s disease, and multiple sclerosis.
• Friends, family, and caregivers of individuals affected by the conditions mentioned above.

By joining the SCONe Advisory Panel, you will have the opportunity to:

• Share your perspectives on topics that matter to you, such as the role of artificial intelligence in research, preventive care and measures for various conditions, data security within the SCONe repository, the societal needs of individuals affected by these conditions, as well as issues related to discrimination, accessibility of resources and stigma.
• Contribute to enhancing transparency in the SCONe research process by reviewing materials and providing feedback.
• Express your interests by indicating which activities and topics you would like to engage with.
• Receive updates on how your feedback and input have shaped projects and advanced research within SCONe.
• Stay informed about upcoming events, including webinars hosted by experts on topics such as dementia, brain health, and eye-related conditions.